I remember vividly getting the official diagnosis of my daughter’s cerebral palsy.
It was something I had greatly prepared myself for. From the moment she entered this world we were told of the possibilities of cerebral palsy due to the extent of her injuries at birth.
I would stay up late reading through other parent’s experiences with their own children’s Cerebral Palsy.
I would read a story that was too difficult for me to envision in my own daughter, so I’d keep reading until I found an account that was easier for me to cope with.
I’ve seen Breaking Bad. The actor that plays Walt Jr. has CP, and he’s a talented actor. He gets around great. That will be my daughter. Right?
We received a relatively early diagnosis compared to most children I’ve seen. She was two months old. Most children do not get an official diagnosis until they turn two years old.
At the time I did not understand it, but in hindsight I realize that should have been a sign of the severity of our situation.
When the doctor broke the news to us we took it with very little emotion.
The countless hours spent analysing other families accounts with CP had numbed me to the reality of our situation.
We had minimized it in our head. The doctor boasted about how well we handled hearing the news, but in reality we were still in denial.
Even coming home we were still struggling to come to grasp with things.
Okay, she does not roll over, and has trouble holding her head up, but she’s a baby.
A lot of babies take a little longer to hit those milestones. Milestones is a word I have grown to loathe.
I had a small box where I had visualized my idea of what CP was. I thought about mobility issues, maybe a wheelchair, we could handle that.
I’m not minimizing those issues. This was just my head space for coping with things. I did not think about how CP affects organ function, abilities to eat orally, or communicate.
I would later find out that my daughter’s specific type of Cerebral Palsy is Spastic Quad Cerebral Palsy.
Meaning it effects most of her body. One thing I took for granted when I began this journey was the absolute uniqueness from one child to the next.
I try to show myself grace for my ignorance in the beginning. I was definitely using unhealthy coping mechanisms, but in the beginning you are just in survival mode.
I could read anecdote after anecdote, but at the end of the day everyone’s experience is different.
As time passes she is starting to become such an amazing little person.
I’m trying to focus less on the diagnosis and comparisons, and focus more on her as a unique individual.
Of course Cerebral Palsy is a major part of our lives. We are riddled with doctors, therapist, and medical equipment.
But, I’m starting to see it more as part of the building blocks that make her who she is, among countless other aspects of her life.
It will not define her, but I do attribute it to the amazingly strong and brave person she is.